December 4–7, Denver, CO — For four days, Denver became the center of a milestone moment in adult Down syndrome medical care. Sixteen leading medical experts representing the foremost adult Down syndrome clinics across the United States gathered at GLOBAL’s Headquarters to finalize the recommendation statements for the highly anticipated Second Edition of the GLOBAL Medical Care Guidelines for Adults with Down Syndrome.

This intensive, collaborative meeting was a resounding success and marks a major step forward in improving health outcomes and quality of care for adults with Down syndrome nationwide.

Building on a Historic First Edition

The First Edition of the GLOBAL Adult Guideline, published in JAMA in 2020, remains the first and only evidence-based practice guideline designed specifically for primary care providers who support adults with Down syndrome. Its publication represented a watershed moment in the field—and the second edition promises to go even further.

What’s New in the Second Edition

The forthcoming edition will feature significant updates and expansions, reflecting both the latest research and the needs expressed by clinicians, families, and self-advocates, Including:

• Updated recommendations across the original nine topic areas, reflecting new evidence and clinical insights.
• Four entirely new topic areas:
  • Blood Cancer
  • Solid Tumor Cancers
  • Sleep Apnea
  • Eye & Vision
• A substantially expanded Musculoskeletal section, addressing mobility, strength, pain, and orthopedics in greater depth.
• A new “Future Research Needs” section, offering a blueprint for clinicians and researchers to guide future studies.
• An expanded workgroup, featuring many returning members, eight new authors, and 15 new volunteers, including clinicians, researchers, and specialists across multiple disciplines.
• This strengthened and broadened authorship reflects the growing momentum in the field and the ongoing commitment to increasing equity and excellence in care for adults with Down syndrome.

A Community Celebration: Reception at the Sie FilmCenter

In addition to the work sessions, the visit included a special evening reception at the Sie FilmCenter. Guideline authors gathered with GLOBAL affiliate members, self-advocates, and their families to celebrate progress and community partnerships.

The evening featured an exclusive screening of the JJ Herz digital short R&R starring Kevin Iannuci, the recipient of the 2025 GLOBAL Quincy Jones Exceptional Advocacy Award.

The Halfway Point in a Landmark Update Process

The Recommendation Finalization Meeting represents the halfway mark of the guideline update process. Guideline best practices require review and updates every five years, and GLOBAL is proud to be right on schedule.

With recommendations now finalized, the next phase begins:
Authors will work on writing the full narrative of the Second Edition, with the goal of preparing a manuscript for submission before the end of 2026.

Meet the GLOBAL Medical Care Guideline Authors

1. Dr. Peter Bulova — Professor of Medicine; Medical Director, University of Pittsburgh Adult Down Syndrome Center
2. Dr. George Capone — Associate Professor of Pediatrics, Johns Hopkins; Director, Down Syndrome Clinic and Research Center, Kennedy Krieger Institute
3. Dr. Brian Chicoine — Co-Founder and Medical Director, Advocate Medical Group Adult Down Syndrome Center
4. Dr. Joaquin Espinosa — Executive Director, Linda Crnic Institute for Down Syndrome
5. Dr. Terry Harville — Professor of Internal Medicine, Hematology/Oncology; Medical Director, HLA & Histocompatibility Laboratory; Medical Director, Immunogenetics & Transplantation Laboratory
6. Dr. Vishal Jhanji — Professor of Ophthalmology, University of Pittsburgh School of Medicine
7. Dr. Christine Heubi — Surgical Director, Complex Obstructive Sleep Apnea Center; Assistant Professor, UC Department of Otolaryngology – Head & Neck Surgery
8. Dr. Barry Martin — Associate Professor of General Internal Medicine, University of Colorado School of Medicine; Medical Director, Adult Down Syndrome Clinic at Denver Health
9. Dr. Emily McCourt — Chief & Vice Chair of Pediatric Ophthalmology; The Ponzio Family Chair for Pediatric Ophthalmology
10. Dr. Lina Patel — Associate Professor of Psychiatry; Director, Down Syndrome Behavioral Health Collaborative
11. Dr. Moya Peterson — Clinical Professor, University of Kansas Medical Center School of Nursing; Medical Director, Adults with Down Syndrome Specialty Clinic
12. Dr. Michael Rafii — Professor of Clinical Neurology; Medical Director, Alzheimer’s Therapeutic Research Institute
13. Dr. Michael Puente — Assistant Professor of Ophthalmology, University of Colorado Anschutz Medical Campus; Director of Medical Student Education
14. Dr. Carl Tyler — Professor of Family and Community Medicine; Cleveland Clinic Lerner College of Medicine
15. Dr. Anna Marie White — Clinical Assistant Professor of Medicine & Pediatrics; Medical Provider, University of Pittsburgh Adult Down Syndrome Center
16. Dr. Thessa Hilgenkamp — Assistant Professor, Department of Physical Therapy, University of Nevada

A Major Step Toward Better Health Outcomes

GLOBAL is honored to convene this extraordinary group of experts, united in their commitment to improving and extending the lives of adults with Down syndrome.

As the Second Edition of the GLOBAL Medical Care Guidelines moves into its next phase, we look forward to sharing more updates—and ultimately delivering a stronger, more comprehensive resource to clinicians, families, and self-advocates around the world.

Dear WONDERFUL Family, Friends and Supporters,

Happy Thanksgiving from your GLOBAL Family! We are so pleased that our hard work is paying off with so many tangible strides. With YOUR support, we have more research, more medical care, and more advocacy that is creating healthier, longer lives for our loved ones with Down syndrome. During this special holiday of thanks, we want to send you all our love and appreciation!

We are thankful for:

Our CHAMPIONS IN CONGRESS and at the NATIONAL INSTITUTES OF HEALTH (NIH) for working with GLOBAL and our self-advocates to create the NIH Down syndrome research program called INCLUDE, which has funded $440 million in life-changing Down syndrome grants over the last seven years! And to Jamie Foxx, Mr. George Dixon, Deidra Dixon and our AMAZING Congressional Co-Sponsors of the DeOndra Dixon INCLUDE Project Act.

Our BRILLIANT SCIENTISTS at our Crnic Institute who have published over 270 impactful studies with over 115 NIH awards from 11 institutes focused on everything from autoimmune disorders, inflammation, growth factor, autism, cancer, metabolism, regression disorder, Alzheimer’s disease and more.

DEDICATED WORLD-CLASS MEDICAL PROFESSIONALS who help us serve over 2,700 patients with Down syndrome from 35 states and 11 countries, who created the first evidence-based GLOBAL Medical Care Guidelines for Adults with Down Syndrome©, and who are translating the American Academy of Pediatrics’ Health Supervision for Down syndrome.

The most AMAZING SELF-ADVOCATES & FAMILIES including 2025 Ambassadors Guion Macsovits and Tucker Emry and their wonderful extended family, and 2025 Quincy Jones Exceptional Advocacy Awardee, Kevin Iannucci, and his amazing family.

PASSIONATE, HARDWORKING STAFF, VOLUNTEERS, and SUPPORTERS who help us provide transformational resources, triage care, and who make our inspirational programs and events possible. A special thanks to Daniels Fund for making important Education Center programs a reality! 

GLOBAL’s LOYAL SUPPORTERS, CELEBRITIES, GENEROUS DONORS, 250K+ SOCIAL MEDIA FOLLOWERS, and GLOBAL MEMBERS, who remind us we are appreciated and motivate us to keep raising the bar! 

“When we first heard about Project CAPE-abilities from the Global Down  Syndrome Foundation, we were excited to learn more. We reached out to see if it would be a good fit and boy was it! Being that our son, Daniel, is only 18 months old, we were concerned about traveling to Colorado to participate in this study. It turned out that wasn’t a problem – they came to us!  When the team arrived at our home, they were friendly and professional and clearly enjoyed what they did because they were excited to play with Daniel. If he got fussy, they were totally understanding and flexible. It felt like we made a difference by contributing to this important research, but our lives were not upset in order to do so – a win-win!  We had a phenomenal experience, and I highly recommend participating!” – Elizabeth Draney, Executive Director of Down Syndrome Alliance of the Midlands

If you’re interested in participating in this study, please fill in the form at the bottom of this page.

Since its inception, GLOBAL has been the only organization in Washington, DC, advocating for increased funding for Down syndrome research at the National Institutes of Health. Our goal is simple – we want to dramatically improve health outcomes for, and increase the lifespans of, people with Down syndrome.

Families make a difference by supporting our advocacy work, but also by participating in studies. Before GLOBAL, there were relatively few research opportunities to help expand knowledge about Down syndrome. Now there are many!

One such study is Project CAPE-abilities (Communication And Play Early abilities in Down Syndrome), which is investigating how play and communication skills develop in children with Down syndrome and how they connect to health and other conditions like autism. The study is open to children with Down syndrome age 17-24 months. And while the research is primarily occurring in Colorado, as one mom discovered, researchers will travel to you!

Elizabeth Draney, Executive Director of Down Syndrome Alliance of the Midlands, shared her family’s experience with the study:

Participating families can receive up to $300.

18th Annual Event Raises $2.6 Million for Groundbreaking Research and Medical Care While Celebrating Diversity, Inclusion and Achievement

You Can Support People with Down Syndrome: Donate Now!

Relive the Magic: Step & Repeat Photos Online | More Photos Coming Soon

Hollywood stars and self-advocates filled the red carpet in a powerful show of support for Global Down Syndrome Foundation (“GLOBAL”). Among the notable attendees were Jessica Biel, Jeremy Renner, Jane Lynch, Kevin Iannucci, Lauren Potter, John C. McGinley, Amanda Booth, Alexis Floyd, Anthony Hill, Niko Terho, Sarah Bock, Max Carver, Shelley Hennig, Beverley Mitchell, Matthew Von Der Ahe, and James Day Keith, all united to champion GLOBAL’s mission to significantly improve the lives of people with Down syndrome through Research, Medical Care, Advocacy & Education.

The night of glamour, gratitude, and inspiration lit up the Sheraton Denver Downtown Hotel as GLOBAL hosted its 18th annual Be Beautiful Be Yourself Fashion Show on Saturday, October 18, 2025. The unforgettable evening attracted over 1,400 guests from across the U.S. and around the world, raising $2.6 million.

Recognized as the largest and most celebrated Down syndrome fundraiser in the world, GLOBAL’s Be Beautiful Be Yourself Fashion Show has raised more than $33 million cumulatively since its inception, transforming research and tangible health outcomes for thousands of children and adults with Down syndrome.

While celebrities provided star power to the event, it was the 21 models who happen to have Down syndrome who truly stole the spotlight, especially GLOBAL’s 2025 Ambassador, Guion Macsovits. A charismatic freshman at Regis University, Guion walked the runway alongside his friend, two-time Academy Award nominee Jeremy Renner, who introduced Guion as “the real superhero.” Guion received a standing ovation from the audience, including 21 proud family members who traveled from Memphis to celebrate his achievements. Their presence brought palpable warmth to the room, embodying the night’s theme of inclusion and empowerment.

Zaya Biel, a GLOBAL Ambassador alum, also graced the runway alongside her godmother and aunt, the award-winning actor and producer Jessica Biel. The full model lineup and video clips from the fashion show will be released later this week.

“We are profoundly grateful to our generous donors and Ambassadors, including Guion, Clarissa, Louie, Zaya, Chase, Tucker, Sam and Sophia, who returned to our Be Beautiful Be Yourself Fashion Show in full force to support GLOBAL,” said Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation. “Our event highlights that people with Down syndrome bring together all walks of life and create an evening of unconditional love, magical inspiration, and tangible progress towards elongating life and improving health outcomes.”

The 2025 Quincy Jones Exceptional Advocacy Awards were presented to five-time Emmy, two-time SAG Award, and Golden Globe Winner Jane Lynch and Champions breakout star Kevin Iannucci. In 2009, iconic music legend Quincy Jones established his namesake award with GLOBAL which quickly became the organization’s highest honor to recognize those who made an impact on the lives of people with Down syndrome. Quincy was a staunch GLOBAL supporter who sadly passed away last year.

“GLOBAL and the Be Beautiful Be Yourself Fashion Show put people with Down syndrome exactly where they belong: in the spotlight. Center stage. Not in the background or on the sidelines, but as the stars,” says Jane Lynch, reflecting on the evening. “GLOBAL is pushing for a world where inclusion isn’t just a nice idea but an everyday reality.”

Kevin Iannucci moved the audience with a heartfelt speech about perseverance and belonging:

“After touring the GLOBAL offices in June, I told my mom it was a dream of mine to receive this award someday,” said Iannucci. “That day, Michelle surprised me with the news that I was the 2025 recipient. I was overwhelmed and started crying — but they were happy tears. I believe this world needs diversity, equity, and inclusion, and we should speak up for those who cannot speak for themselves. People with Down syndrome can do amazing things when given the opportunity. We want to be accepted and included.”

Local 9NEWS anchors Kim Christiansen and Phil Lipof hosted the evening with warmth and humor, guiding guests through an unforgettable program.

Twenty-one extraordinary models who happen to have Down syndrome walked the runway alongside Hollywood’s finest, and devoted community supporters. Among them were Denver Broncos Cheerleaders Brittany and Sophia, whose radiant energy and genuine connection with the models brought even more joy to the stage.

The event was co-chaired by Jay Mills & Kiana Akina and Meg & Andy Kauth, whose dedication and creativity helped deliver one of GLOBAL’s most successful events to date.

Jay Mills and Kiana Akina shared: “Every year, this show proves that love and science together can move mountains. Seeing so many people come together for GLOBAL — to celebrate inclusion, to fund research, and to change lives — has been deeply inspiring. We’re honored to help carry this mission forward.”

Meg and Andy Kauth added, “This cause touches our family deeply. Having two nieces with special needs, we’ve seen firsthand how much progress depends on understanding, compassion, and research. We were so moved that our nieces got to walk in the fashion show. GLOBAL gives families like ours hope, and tonight, that hope was shining on stage.”

The live auction, led by Grant Snyder, featured exclusive experiences and one-of-a-kind items that drove spirited bidding in support of GLOBAL’s mission. Highlights included a chance to walk the red carpet at the upcoming premiere of Jessica Biel’s newest film Matchbox, a bike ride or golf outing with Lance Armstrong, a New Year’s Eve Dinner with Peter Kudla, exclusive experiences with several Denver Broncos players, luxury getaways, and dining opportunities with stars Max Carver, Shelley Hennig, and Beverley Mitchell.

Proceeds from the Be Beautiful Be Yourself Fashion Show directly fund GLOBAL’s world-class affiliates on the Anschutz Medical Campus — the Crnic Institute for Down Syndrome, the Alzheimer’s & Cognition Center, and the Sie Center for Down Syndrome at Children’s Hospital Colorado, as well as the GLOBAL Adult Clinic at Denver Health. Together, these institutions are pioneering transformative research and comprehensive medical care for people with Down syndrome worldwide.

The event’s success reflects the generosity of GLOBAL’s Leadership Circle, Sponsors, Awardees, Models, Ambassadors, Partner Organizations, Celebrities, Self-Advocates ,and Families.

To view photos, videos, or to make a donation, visit bebeautifulbeyourself.org.
For more information about the Global Down Syndrome Foundation, visit globaldownsyndrome.org.

DENVER, COLORADO – OCTOBER 18: Fashion show models onstage at Global Down Syndrome Foundation’s 18th Annual Be Beautiful Be Yourself Fashion Show at Sheraton Downtown Denver Hotel on October 18, 2025 in Denver, Colorado. (Photo by Tom Cooper/Getty Images for Global Down Syndrome Foundation)

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 33 states and 11 countries.

Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 130 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World^TM. GLOBAL also organizes the annual AcceptAbility Gala in Washington, DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media Facebook, Instagram, X, LinkedIn, and YouTube.

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Experience the Magic at the Be Beautiful Be Yourself Fashion Show, the Largest Down Syndrome Fundraiser in the World

You Can Support People with Down Syndrome: Purchase Tickets, Donate or Sponsor a Model!

The Be Beautiful Be Yourself Fashion Show is the largest annual Down syndrome fundraiser in the world, attracting over 1,400 attendees and having raised a cumulative $31 million for life-saving research and medical care. Proceeds go to the Global Down Syndrome Foundation (GLOBAL), supporting 400 scientists and medical professionals serving thousands of children and adults with Down syndrome from the U.S. and around the world. Each year, the event recognizes a GLOBAL Ambassador, two Quincy Jones Exceptional Advocacy Awardees, and the Event Co-Chairs. The event finale is an ovation-worthy fashion show featuring beautiful models who happen to have Down syndrome and A-list celebrities. A sumptuous three-course meal, and one-of-a-kind live and silent auction items are also part of the evening many describe as “magical.”

WHEN & WHERE

Saturday, October 18, 2025

5:00 PM – Receptions/Silent Auction; 5:30 PM – Red Carpet; 7:00 PM – Dinner/Live Auction/Honorees & Awards; 8:30 PM – Fashion Show; 9:30 PM After Party

Sheraton Denver Downtown Hotel, 1550 Court Place, Denver, CO 80202

WHO

Jessica Biel – Jessica Biel is an Emmy-nominated actor and producer known for her acclaimed roles in The Sinner, Limetown, The Illusionist, Candy, The Better Sister, and dozens of other feature films and series. Jessica is proud to support GLOBAL’s research and medical care, which has had a positive impact on her niece, Zaya, who happens to have Down syndrome. Zaya is a GLOBAL Ambassador whose parents are also deeply involved with GLOBAL and the Sie Center for Down Syndrome at Children’s Hospital Colorado. Jessica will walk the runway with Ambassador Zaya at this year’s event.

Jeremy Renner – Jeremy Renner is a two-time Academy Award nominee and is one of Hollywood’s most versatile and respected actors. Beyond his critically acclaimed roles in films such as The Hurt Locker and The Town, Jeremy is known for playing Hawkeye in the Marvel Cinematic Universe Avengers films and for his role in the Mission Impossible franchise.  After attending the fashion show in 2019, Jeremy formed a bond with GLOBAL Ambassador Guion Macsovits with whom he will walk the runway at this year’s event.

Jane Lynch – recipient of GLOBAL’s most prestigious honor, the 2025 Quincy Jones Exceptional Advocacy Award.

Kevin Iannucci – recipient of GLOBAL’s most prestigious honor, the 2025 Quincy Jones Exceptional Advocacy Award.

Guion Macsovits – 2025 GLOBAL Ambassador

Lauren Potter – Actor, Glee

John C. McGinley – Award-winning Actor, Quincy Jones Exceptional Advocacy awardee & GLOBAL Board Member

Amanda Booth – Model, Actor, Quincy Jones Exceptional Advocacy awardee, Advocate

Shelley Hennig – Actor, Teen Wolf

Max Carver – Actor, Teen Wolf

Alexis Floyd – Actor, Inventing Anna & Grey’s Anatomy

Anthony Hill – Actor, Grey’s Anatomy

Niko Terho – Actor, Grey’s Anatomy

Matthew Von Der Ahe – Actor, Champions

James Day Keith – Actor, Champions

Sarah Bock – Actor, Severance

Beverley Mitchell – Actor, 7th Heaven

Kim Christiansen – 9NEWS Anchor

Phil Lipof – 9NEWS Anchor

Michelle Sie Whitten – President & CEO, Global Down Syndrome Foundation

Dr. Joaquín Espinosa – Executive Director, Crnic Institute for Down Syndrome, University of Colorado Anschutz Medical Campus, University of Colorado Boulder

Dr. Nicole Bauman – Director, Sie Center for Down Syndrome, Children’s Hospital Colorado

Jay Mills & Kiana Akina and Andy & Meg Kauth, Event Co-Chairs

WHY

Down syndrome is the leading cause of developmental delay in the world, affecting an estimated 400,000+ Americans and millions worldwide. Yet it has been one of the least funded genetic conditions by our federal government. GLOBAL is the largest U.S. non-profit working to save lives and dramatically improve health outcomes for people with Down syndrome through Research, Medical Care, Education & Advocacy.

GLOBAL’s annual Be Beautiful Be Yourself Fashion Show is the largest annual Down syndrome fundraiser in the world, raising critical funds for government advocacy, breakthrough research, life-saving medical care and more. The event brings together 1,400 attendees, representing multiple stakeholders in the Down syndrome community, to celebrate major new federal research funding increases, impactful science at the Crnic Institute for Down Syndrome and at the Alzheimer’s & Cognition Center, as well as transformative care at the Sie Center for Down Syndrome and the GLOBAL Adult Clinic.

The event allows GLOBAL to truly deliver on its mission of elongating life and dramatically improving health outcomes for children and adults with Down syndrome.

HOW TO SUPPORT

Tickets and Table Sponsorships,  can be purchased online in addition to Model Sponsorships & Donations.  Volunteer applications will continue to be processed until October 10, 2025.

To cover the event or receive photos and/or videos, contact Trisha Davis- trishdavis0707@gmail.com at (818) 640-9259 OR Anca Elena Call – acall@globaldownsyndrome.org at (720) 320-3832.

For more information, visit www.bebeautifulbeyourself.org and www.globaldownsyndrome.org.

In celebration of Down Syndrome Awareness Month, GLOBAL Vice President – Strategic Alliances David Tolleson and Senior Project Manager, MaryKate Vandemark met with Kelli Caughman and Crystal Lotterberry, co-founders of the Black Down Syndrome Association. These dynamic leaders shared their thoughts on creating spaces where families can learn, find community, and make an impact through research and advocacy.

DAVID: Thank you for joining us today! To start off, would you please share a bit about yourselves and your families?

KELLI: I have a family of 5. We have an 18-year-old daughter who is going off to college this year, studying biology. She has wanted to be an OB/GYN since she was 9. Over the years since we found out about her brother’s diagnosis of Down syndrome, she has said that she’s so excited to be able to give that diagnosis to families like ours. So, we’re excited about that journey! We also have 8 and 10-year-old sons. Our 10-year-old, Cree, has Down syndrome and keeps us dancing to the latest trends. He loves good dancing songs and Disney karoake! Knox, our 8-year-old, keeps us busy with baseball. My husband and I are both from South Carolina, but we currently live in Fishers, Indiana. In addition to being a wife, mom, BDSA president, and advocate, I’m also a kindergarten teacher.

CRYSTAL: I’m married to my husband, Bartley, and we have a beautiful, lovely son, Griffin, who is 5 and has Down syndrome. We also have 2 dogs rounding out our family – Sugar Bear and Loki. I work for the U.S. Department of Justice where I’m a Community Treatment Coordinator. I work in the Reentry Division, where we assist offenders after they’re released from prison to help ensure successful reentry back into society.

DAVID: That’s so important. People need a good start to move on with their lives.

CRYSTAL: Ninety-five percent of people who are incarcerated will return home and they’re going to be your neighbors. So, it’s important to make sure these folks have the skills and tools they need so they can come back and be successful and stay out of prison and contribute to society in a meaningful way.

DAVID: How did you two meet and what led you to found the Black Down Syndrome Association (BDSA)?

KELLI: We live in different states but connected while doing advocacy work for a national non-profit organization. We had seen each other online but then attended a conference together where we started talking about all the similarities in stories we heard from moms who look like us. They led us to realize that there was something missing. As I told Crystal, ever since Cree was born, I wanted to create spaces where parents were connecting. I was able to do that through our local Down syndrome organization, but even there other moms were asking why there weren’t more people who looked like us showing up and being seen and celebrated. Crystal felt the same and had heard similar stories, so we decided to start BDSA.

DAVID: When was the BDSA founded?

CRYSTAL: August 29, 2022, so we’re celebrating 3 years!

DAVID: Congratulations! Now that you’ve been up-and-running while, what is your focus, how do you serve families, and how many families do you serve?

CRYSTAL: We serve about 1,500 families worldwide through our online support group. We have families across America, but also in Africa, Trinidad & Tobago, and various Caribbean islands. If they find us and they’re supporting and loving black children or other family members with Down syndrome, we welcome them into our online support group. It’s a phenomenal group!

KELLI: When people join, they often say it feels like family. We hear the phrase “family reunion” a lot so when we decided to host a conference, we knew it had to be called a family reunion where we can all come together – moms, dads, kids, aunts, uncles, grandparents, and other caregivers. Our online support group is limited to parents, legal guardians, and caregivers, so it will be fun to have a broader group when we meet in person. Our focus is on education and celebration. We encourage our families to be seen and heard and to participate with their local organizations. We see ourselves as an extra layer of support but want them to show up in their local communities and be the change that they want to see. Our families just want to be seen and represented. BDSA has been doing this work through webinars and a monthly newsletter of resources. We also encourage our families to participate in research.

DAVID: The BDSA Family Reunion Conference sounds like a great next step in your programming!

KELLI: It really is the culmination of our online work. We’re all coming together to talk about it all – education and medical, for example. We’re going to have a sibling panel, and 2 different opportunities to participate in research onsite. We’ll have a mental health expert there. I’m proud that we’ll have many speakers who look like us. I think it’s important for our families to hear from speakers who reflect our community.

DAVID: We appreciate what you do to connect folks to our resources, because you can have all the best information, medical care, and research in the world, but if people don’t know about it, it doesn’t do them any good. So, we are grateful for you making that connection with your members. And, also on federal advocacy. It’s more important now than ever. One of the motivations for GLOBAL’s advocacy around the DeOndra Dixon INCLUDE Project Act is the fact that, sadly, people who are black and have Down syndrome tend to die at a much younger age than their counterparts. We need to figure out what’s going on there, because that’s not good for anyone.

KELLI: So true. That’s one of the things that I love that GLOBAL does. We’re a small organization and we can’t do everything that GLOBAL does, but we love the fact that you invite us to the table. We have really enjoyed doing advocacy on Capitol Hill and being represented. It has opened a lot of doors for us for networking, but it’s also great for our families to see that it’s something they can do, too. We’re glad to have families connected to BDSA, but to also know they can connect with GLOBAL.

DAVID: We’re excited to hear more about your conference. Give us more details, please!

CRYSTAL: We’ve capped attendance at 200 to try to keep our first event on the smaller side. It’ll be November 7-9 in Grand Prairie, Texas, about 15 minutes from Dallas-Ft. Worth International Airport. We’ll be at Epic Central, which is a new convention, dining, and entertainment space. We know our families are going to love it!

DAVID: We are very proud to support this year’s inaugural conference with a GLOBAL Education Grant, which will help pay for two keynote speakers one from the UT – Southwestern Down Syndrome Clinic and the other who is Director of the Developmental Behavioral Pediatric Clinic at Children’s Medical Center in Dallas. Also, our GLOBAL affiliate, the Linda Crnic Institute, will be there with the Human Trisome Project (HTP), alongside their colleagues with the Boys Town National Research Hospital Hearing Bus. Tell us a little bit more about the decision-making process on that and why you think it’s important to ensure families in your community have the opportunity to participate in research.

CRYSTAL: Black and brown folks are underrepresented in research, so we wanted to make it easier for families to participate. It made sense to bring the researchers to where our families will already be gathered. Also, families will be able to ask the researchers questions themselves so they can get their own confirmation that this is something that’s right for them and learn more about how this research will benefit our families. I always tell folks that Kelli and I have already vetted the research, and my family has either participated or we’re going to soon because I know how important it is. Not everything will benefit our children today, but it will help those who come behind us and we’ve got to be part of making that happen.

KELLI: We want to make sure that if people are going to spend their hard-earned money to come to this conference, it’s packed with great information, and they can also participate in research if they want. Both Crystal and I and our families have participated in HTP. We want to remove barriers to research participation for others while ensuring that our conference is well-rounded and a place where they feel celebrated and leave with really great information.

DAVID: Thank you both for participating in HTP. Crystal, I believe you’ve also been up to visit our GLOBAL affiliate, the Sie Center for Down Syndrome, haven’t you?

CRYSTAL: Yes, I took Griffin last year! It was an absolutely incredible experience. I put everything on social media and when I came back, I posted that EVERYONE needs to try to get to the Sie Center at least once to have their children seen. Even though I’m okay with the care Griffin receives here locally, going to the Sie Center let me know things to be on the lookout for. It was well worth the plane ride to Denver. We’ll be back!

DAVID: I really encourage families that are able to go to do so, particularly when things are going well, because you never know when things might go wrong – such as regression cropping up. You really want to be an established patient if you suddenly need that extra help. Plus, it can take awhile to get into any specialty clinic, so there’s an advantage to already being in the system.

CRYSTAL: It took us 3 months to get into the Sie Center, but we had a 6 month wait to get into our local Down syndrome clinic, so that was a lot better.

DAVID: We’re grateful to you and the BDSA Board for supporting our work as a GLOBAL Organization Member. Why is GLOBAL’s federal advocacy, research, and medical work important to you and the families you serve?

KELLI: After I had the opportunity to go advocate in Washington, DC, meet Members of Congress and talk to families, I remember going home and telling my husband this is something we must do. It’s good for our families to see that it’s something they can do, too.

MARYKATE: It’s all so important. GLOBAL is really leading the way on advocacy related to research and medical care. Like you said, it’s so important to get your families to DC so they can see what it’s all about and for them to bring it home like you did, Kelli.

KELLI: It was great for our families to see us on Capitol Hill with GLOBAL for the DeOndra Dixon INCLUDE Project Act, but they also got to see us with Jamie Foxx! It’s good to see people who look like you supporting the cause – that means a lot to us. Crystal, do you want to tell them about our celebration while we were there?

CRYSTAL: While we were with GLOBAL in DC, Kelli and I were talking about having a BDSA conference, but I told her we needed to raise a lot of money to make it happen. She said to just have faith. Well, we don’t know if it was because we were in DC with GLOBAL, or because Jamie Foxx asked us up on the stage, but we were up there dancing and my phone pinged and Ludacris had given us a big donation! I just went into a corner and cried. Kelli said, “Why are you surprised? I told you to have faith!”

KELLI: Whenever we’re in the room with GLOBAL, we’re always networking. You never know where the next opportunity will come from. It means a lot to us as BDSA when GLOBAL asks us to come to an event or to repost or share your resources. We’ve not only been able to vet GLOBAL for our families, we can tell them that we know the heart of the people running the organization and that what’s important to those of you at GLOBAL is also important to us.

DAVID: Is there anything else you’d like to share?

KELLI: We’re always meeting people who are interested in BDSA. They ask us our “why”, so we share our mission and share our stories. But I want people to know that BDSA is another layer of support for families. For some families, we’re their everything, but for many families we’re one of many things. We do have families that are represented locally, but we also have families that we want to encourage to participate locally. We want them to show up and show out – not just for BDSA events, but also events with their local Down syndrome association. That’s your home and that’s where you can have the biggest impact.

CRYSTAL: The BDSA will always be here for our families, but we want them to go out into the world, too. We’ll still be right here if they need us.

KELLI: We also want local Down syndrome affiliates and national organizations to know that BDSA wants to work with them. I think partnering is beneficial to both parties, so don’t be afraid to reach out!

New study in Nature Communications highlights need for personalized medicine tailored to different life stages in individuals with Down syndrome

AURORA, Colo. (Sept. 25, 2025) – In a groundbreaking new study published in Nature Communications, researchers from the Linda Crnic Institute for Down Syndrome (Crnic Institute) at the University of Colorado Anschutz discovered important differences in the physiological changes observed in over 300 individuals with Down syndrome across the lifespan.

The study is part of the ongoing Human Trisome Project, a large, detailed cohort study of people with Down syndrome, including deep annotation of clinical data, multi-omics datasets, and the largest biobank for the study of this condition to date.

The Crnic Institute team analyzed hundreds of blood samples to identify physiological differences between research participants with Down syndrome versus control participants without Down syndrome at different life stages. They observed that triplication of chromosome 21, or trisomy 21, the genetic condition that causes Down syndrome, leads to age-specific effects during childhood, adolescence, and various stages of adult life. They identified key biological processes that are consistently dysregulated at all ages as well as those that are dysregulated only during specific age ranges.

“These results reveal for the first time that trisomy 21 changes human biology in unique ways as persons with Down syndrome grow and age,” said Joaquín Espinosa, PhD, executive director of the Crnic Institute, professor of pharmacology, principal investigator of the Human Trisome Project, and one of the senior authors of the paper. “Whereas some effects of the extra chromosome are observed throughout life, such as immune hyperactivity and dysregulated oxygen metabolism, other effects occur only in children or only in adults.”

“The magnitude of these age-specific changes is remarkable,” explained Neetha Paul Eduthan, MS, one of the lead authors of the paper. “When examining the genes, proteins, metabolites, and immune cell types affected by trisomy 21 in children versus adults, the changes that are unique to one age group always outnumber those that are conserved across the lifespan.”

To put these observations into perspective, the team also analyzed the temporal effects of the sex chromosomes, or sex karyotype, defined as XX for females and XY for males.

“This analysis revealed the profound impacts of puberty on human biology,” explained Micah Donovan, PhD, instructor of pharmacology and co-lead author of the study. “The molecular differences between young boys and girls are negligible in the first decade of life, but with the onset of puberty and gonad activation, vast biological changes are observed across the sexes, including important differences in gene expression, metabolism, and immune function.”

The study team also employed advanced computational approaches to elucidate how human biology changes from early childhood to late adult life, and how these temporal changes are affected by trisomy 21.

“We identified eight major temporal trajectories for gene expression, protein levels, metabolite levels, and immune cell frequencies in the bloodstream,” said Matthew Galbraith, PhD, associate research professor of pharmacology, director of the Data Sciences Program at the Crnic Institute, and one of the senior authors of the paper. “Biological aging is not a linear process, and our analyses provide an unprecedented view of the developmental trajectories of more than 20,000 biological data points from 6-month-old babies to sexagenarians.”

The Crnic Institute study team has already embarked on several follow-up studies, including new investigations of impaired musculoskeletal growth and accelerated immune aging characteristic of Down syndrome.

“This is another important breakthrough from our scientists at the Crnic Institute that we hope will lead to more personalized medicine and effective treatments for people with Down syndrome at different ages,” said Michelle Sie Whitten, president & CEO of Global Down Syndrome Foundation (GLOBAL), a partner and an affiliate organization of the Crnic Institute. “As a mother of a brilliant 22-year-old with Down syndrome, I am eager to understand how this new knowledge may elongate life and improve the health of millions of people with Down syndrome across the world. We are proud that GLOBAL’s advocacy work with Congress and with the National Institutes of Health (NIH) has led to the establishment of the trans-NIH Down syndrome funding initiative, the INCLUDE Project, that underwrites this and numerous other groundbreaking studies and clinical trials.”

About the Linda Crnic Institute for Down Syndrome

The Linda Crnic Institute for Down Syndrome is one of the only academic research centers fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, the Anna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute supports a thriving Down syndrome research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.org or follow us on Facebook, Instagram, X, Bluesky, and LinkedIn @CrnicInstitute.

About the University of Colorado Anschutz

The University of Colorado Anschutz is a world-class medical destination at the forefront of transformative science, medicine, education and patient care. The campus encompasses the University of Colorado health professional schools, more than 60 centers and institutes and two nationally ranked independent hospitals – UCHealth University of Colorado Hospital and Children’s Hospital Colorado – which see more than two million adult and pediatric patient visits yearly. Innovative, interconnected and highly collaborative, CU Anschutz delivers life-changing treatments, patient care and professional training and conducts world-renowned research fueled by $910 million in annual research funding, including $757 million in sponsored awards and $153 million in philanthropic gifts.

About Global Down Syndrome Foundation 

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,500 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World TM. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media Facebook, X and Instagram.

This year’s GLOBAL Education Awards will fund 14 programs—from Alzheimer’s education initiatives to fitness classes for people with Down syndrome.

Denver – August 29, 2025 – Global Down Syndrome Foundation (GLOBAL) is pleased to announce that 14 Down syndrome organizations in the United States and beyond have been selected to receive GLOBAL Education Awards. The 2025 awards bring GLOBAL’s investment in local medical, healthcare, and research funding to nearly $1.3 million since the program’s inception. GLOBAL has given out a total of 359 Education, Employment and Emergency Relief Awards supporting approximately 25,000 individuals with Down syndrome, families and professionals.

“GLOBAL believes in the power and heart our Organization Members bring to their communities each and every day,” says Michelle Sie Whitten, President & CEO of GLOBAL. “Our goal with these awards is to empower meaningful change for the families they serve.”
David Tolleson, Vice President, Strategic Alliances, concurs. “It is such an honor to work alongside so many friends in our community who support GLOBAL’s mission to improve health outcomes for our friends and family members with Down syndrome.”
This year’s recipients are in California, Delaware, Florida, Indiana, Nebraska, New Mexico, North Carolina, Tennessee, Texas, Mexico, and Uganda.

Mildred Katusabe, founder of Rowan’s Down Syndrome Centre, expressed her gratitude, noting, “We will ensure that it will make a big impact on the situation of people with Down syndrome in Uganda!”

“Support for our adults is definitely an area that has many gaps,” says Anne Dichele, Executive Director of Gold Coast Down Syndrome Organization in Boca Raton, Florida. “With GLOBAL’s Award we can equip families with information and strategies around Alzheimer’s in Individuals with Down Syndrome which unfortunately is something our adults are highly predisposed to. With evidence-based guidelines and this GLOBAL award we can begin to make a tangible difference.”

The 2025 GLOBAL Education Award recipients and their funded programs are as follows:

Adult Disability Medical Healthcare (Atlanta, GA): Self-Advocacy for Healthcare Training in Teens and Adults with Down Syndrome and their Family Members/Caregivers will present educational webinars on life skill topics for ADMH patients to encourage greater understanding and compliance with their treatment plans.

Black Down Syndrome Association (Fortville, IN): Funds will help support the first BDSA Family Reunion Conference a 3-day event created to provide education, connection, and celebration for Black families of individuals with Down syndrome.

Down Syndrome Alliance of the Midlands (Omaha, NE): The Cognitive Collective is designed to enhance cognitive skills – memory, attention, engagement, speed, and accuracy through 3 programs – “Dancing Beyond Limits”, “Drumming for Wellness”, and “All Abilities Gaming.”

Down Syndrome Association of Central Texas (Austin, TX): Pathway to Care Packages will equip healthcare professionals with the tools, resources, and training required to deliver an informed and accurate Down syndrome diagnosis. Information will also be provided to new parents.

Down Syndrome Association of Delaware (Newark, DE): Power to Marc is a live webinar and e-learning course to introduce the tools and process steps so that people with disabilities can participate in their own care without the use of restraints or sedation.

Down Syndrome Association of Memphis & the Mid-South (Cordova, TN): The Down to Move Wellness Series – Water Wise & Taekwondo program will offer weekly adaptive swim lessons and taekwondo for families to encourage physical movement, self-discipline, and emotional well-being.

Down Syndrome Connection of the Bay Area (Danville, CA): Funds will support the Empowering Every Stage: Medical and Life Planning for Individuals with Down Syndrome conference for parents/caregivers, medical and mental health providers, and adults with Down syndrome.

Down Syndrome Foundation Uganda (Kampala, Uganda): The Down Syndrome Clinical Excellence Training program will enhance healthcare provided at birth and before discharge from the hospital.

GiGi’s Playhouse – Orange County (Laguna Hills, CA): GiGiFit is a 15-week, evidence-based fitness program for self-advocates which combines physical therapy principles with group fitness classes to build strength, improve endurance, and promote wellness. The program also includes education on nutrition to promote healthy meal planning.

Gold Coast Down Syndrome Organization (Boca Raton, FL): The Understanding Alzheimer’s in Individuals with Down Syndrome through Knowledge, Action, and Hope conference will equip families with information and strategies they need as their loved one with Down syndrome ages.

North Carolina Down Syndrome Alliance (Raleigh, NC): The Medical Outreach/UNC Clinic program will provide support education on best practices, the GLOBAL Medical Care Guidelines for Adults with Down Syndrome, delivering a diagnosis, and more.

Rio Grande Down Syndrome Network (Albuquerque, NM): The Partners in Care: Down Syndrome Medical Education Initiative will work with local hospitals and medical schools to provide up-to-date, evidence-based training to medical professionals to increase knowledge, skills, and sensitivity among providers working with individuals with Down syndrome.

Red Down México (Puerto Morelos, Mexico): Clinica T21 en línea – Circuito de Atención Integral 2025 is a telehealth initiative to deliver comprehensive medical, psychological, and educational care across Mexico.

Rowan’s Down Syndrome Awareness Centre (Hoima, Uganda): Research and Development of a Delivery System for Medical/Therapy Support for People with Down syndrome in Uganda will develop systems to support research information, participation, and access for healthcare professionals and individuals with Down syndrome.

To learn more about the GLOBAL Membership Awards, visit https://www.globaldownsyndrome.org/global-awards/.
To learn more about individual and organization GLOBAL memberships, visit https://www.globaldownsyndrome.org/global-membership/.
To learn more about Global Down Syndrome Foundation, visit https://www.globaldownsyndrome.org/.

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About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 120 Down syndrome organizations worldwide and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World™. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media – Facebook, X, Instagram, and LinkedIn.